Tuesday, 5 June 2012

Decisions, decisions

Moving a loved one into a care home is one of the most difficult, emotional and life-changing things you will ever do. It is even more challenging when the person you are moving into a care home has dementia, and if the advancement of that is what is forcing the move to happen, your loved one will probably be unable to make their own decisions about their care, leaving it to their family to make some very tough choices.

Over the course of my father’s dementia we had to find a new home for him on three separate occasions; initially a residential home with an EMI (Elderly Mentally Infirm) unit, then an EMI nursing home, and finally a home that could meet his end-of-life care needs.

Dad was never able to play any part in these searches, and I remember vividly commencing that first round of visiting homes with huge trepidation. You are conscious of finding somewhere that your loved one will like, and where the care, atmosphere, staffing, facilities, services, opportunities and location match your expectations.

Many people look for somewhere that they can visit easily, but the overwhelming consideration has to be quality of care. Looking back on that first foray into choosing a home, we knew so very little about what exactly we were really looking for, but we settled on a home that, based on dad’s assessment, should have been able to meet his needs.

Just a few short months later, however, and the home said that they could not manage dad’s increasingly challenging behaviour, soit was back to hospital for dad, and for us, back to finding him a home, only this time we had to look at nursing homes.

Cue visits to three homes, one of which we could not wait to get out of (the smell, the couldn’t-care-less attitude of the staff and the whole atmosphere just screamed GET OUT!), and another that, whilst undoubtedly very smart, had ‘Visiting Times’ and ‘Toileting Times’ and clearly wanted to be as inflexible as possible. Moving dad there would have felt like putting him in a prison. So we settled on home number three, not because it was aesthetically beautiful (it wasn’t) or because the rooms were spacious (they weren’t), but because we were so impressed by the staff we met on that visit, and we continued to be impressed by them until the day they sadly left for pastures new.

Ideally that would have remained dad’s home for the rest of his life, it certainly should have done, but after four changes of profit-making ownership and numerous managers, the last instalment proved too horrific for dad to remain there, and so we were back on the care home hunt again. This time, with dad’s specific end-of-life care needs, we had a home we liked turn him down purely because his face didn’t fit. With dad now taking up an acute hospital bed and his birthday fast approaching, I pestered the powers that be until we were offered the chance to look around another home. Run by a not-for-profit organisation, it was a revelation in care homes, and proved to be a wonderful place for dad’s last days.

So, what have we learnt from this experience? If you are looking for a home for the first time you may well feel like a cat caught in headlights. It is pretty overwhelming and the pressure to make the right decision is huge. No home will ever be perfect, but it should always be the best it can be, and give you the reassurance that your loved one will receive the highest quality care, where all their needs are met with dignity and respect, and where you are actively involved in planning every aspect of their care.

Be choosy, ask as many questions as you need to, if possible see at least three homes before you decide, research and see if anyone you know has experience of the home(s), if you get the chance ask other visitors about the home, even residents if they can answer you, revisit at another time, even visit unannounced, trust your gut instinct and analyse staff carefully; if they haven’t got time for you or indeed the residents they are meant to be caring for during your visit, chances are they won’t have time for your relative either. I would also add that you can check the CQC report for every care home online.

Inevitably finding a care home for a loved one can be a very sad process, associated with a lot of negativity. I think much of the stigma around care homes is because they are seen to be places where people die. Indeed, one relative we knew from dad’s first nursing home even called it ‘God’s Waiting Room’. It is true that many people pass away in a care home, including my father, but they can be places of positivity and happiness in life as well.

Over the years we spent many happy hours having meals with dad, listening to music, sitting in the garden and drinking copious cups of tea, proving that the right care home for your loved one can also be a home from home for you too.

4 comments:

A cat caught in the headlights is definitely how we felt when we had to find a care home for my Mum last year. The hospital effectively threw her out to a 'step down' bed which we had to pay for after the first week. My husband and I had to make a very quick decision to move her from Essex to Lincolnshire and rushed home to find a suitable (we hoped) care home. As Mum is self funded cost was a consideration. We knew about some of the local homes and where we didn't want her to go. We visited a fancy modern home but the dementia residents were locked away on the top floor which on the day we visited smelt of wee. It was a busy floor with men and women living together and we didn't like the atmosphere. On a whim (bad way to choose no doubt) we called unannounced at a gloomy old building that I used to pass every day at work and the atmosphere from the word go was so different. To cut a long and difficult story short we decided this home was the right place for Mum and we have been lucky that the treatment she has had since March 2011 has been exemplary. My only fear is that the difficulties posed by an old building may one day mean itis no longer viable as a home. I did check the CQC report before we settled on the home (I'm not impressed at all by the way the new reports are set out) and I always keep my eyes and ears open when I am there but I cannot praise the staff highly enough for their care and love of the residents. Mum has improved so much from living in this safe and supported environment.

Just a thought, have you thought of linking your blog to a Facebook account? You would be able to link to your posts there and spread the word about Dementia, good and bad, and I would happily repost so that all my 'friends' could read more about what you are doing and your valuable experiences. We were and still are so frightened by this journey that we are on and sites like yours do help. There is still so much ignorance about Dementia and we are all likely to be touched by it so spreading information can only be good.

Hi Julie, many thanks for your kind comments and for sharing your story. Apologies it has taken me a while to reply, but I have now set up the Facebook page that you and others have requested. It is here: http://www.facebook.com/pages/D4Dementia/420244488015817

Thanks Beth for sharing your at times very painful journey with Dad. My own experience includes growing in a family oriented care home which was full of love and deep respect. I now seek to release compassion in care. You may be interested in hearing this short clip which describes the difference between compliance and compassion. My own search when i visit care homes starts with 'are the people here smiling? - and are the people here using touch to give comfort? The clip is here http://dl.dropbox.com/u/57842869/Andy%20Bradley%20on%20BBC%20Kent.mp3

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.